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Did you know that amyloidosis can affect your kidneys? In fact, it’s one of the most common organs affected by the condition. Renal amyloidosis is when abnormal proteins build up in your kidneys and cause damage. Catching kidney problems early is important to help prevent lasting damage. Kidney issues can be very different from person to person.
Learn how amyloidosis can affect your kidneys, including the different types and symptoms, like proteinuria and swelling in various parts of the body. You’ll also find out what treatments may help.
Amyloidosis is a rare disease that develops when your body produces irregular proteins called amyloid proteins. These proteins can’t be broken down in the body the way normal proteins are. Instead, they clump together and form amyloid deposits that can affect different tissues and organs in your body. The specific type of amyloid protein determines the type of amyloidosis and the organs affected. The heart, brain, stomach, gut, liver, and kidneys are common targets of amyloidosis.
Renal amyloidosis is a type of amyloidosis that affects the kidneys. It can cause protein to leak into your urine, which may lead to swelling in your body.
Five forms of amyloidosis are related to the kidneys. Each type affects the kidneys differently and may require a specific treatment approach.
Amyloid light-chain amyloidosis (AL amyloidosis) is the most common type of systemic amyloidosis, affecting about 40 out of every 1 million people in the U.S. It’s also sometimes called immunoglobulin light-chain amyloidosis and primary amyloidosis. This type happens when proteins clump together in your heart, kidney, and other organs. About 66 percent of people with this type of amyloidosis have amyloid protein buildup in the kidneys.
AL amyloidosis typically affects people over age 65. People with AL amyloidosis are more likely to develop chronic (long-term) kidney disease.
Kidney problems are very common in amyloid A amyloidosis (AA amyloidosis, also called secondary amyloidosis). This type is usually linked to chronic inflammatory conditions like rheumatoid arthritis or inflammatory bowel disease, or ongoing infections. AA amyloidosis isn’t an autoimmune disorder but can be caused by one.
Leukocyte cell-derived chemotaxin-2 (LECT2) amyloidosis is a more recently discovered type of amyloidosis that commonly affects the kidneys and liver. According to the National Institute of Diabetes and Digestive and Kidney Diseases, this type of amyloidosis is most common in Hispanic adults — particularly those of Mexican descent.
Hereditary amyloidosis comes from gene changes that can be passed from parents to children. It’s more common in people who have a family history of the condition.
Dialysis-related amyloidosis is caused by dialysis, a treatment for kidney failure. In this case, amyloid proteins cluster in bones, joints, and tendons. This type is less common today because dialysis methods have improved.
The main function of your kidneys is to filter waste from your blood. Your kidneys have millions of units called nephrons that filter your blood. Nephrons consist of glomeruli and renal tubules. Glomeruli are small blood vessels that filter your blood and send it into the renal tubules. These tiny tubes put the nutrients back into your body and get rid of the waste in your urine.
Besides filtering your blood, kidneys also contribute to other vital functions, including:
When amyloid proteins deposit in the kidneys, your body fails to filter the blood. As a result, there’s an imbalance of water, salts, and waste that can lead to kidney failure.
The most common outcome of renal amyloidosis is nephrotic syndrome — a group of symptoms that can be a sign of kidney damage. Here are some common symptoms of nephrotic syndrome.
As amyloid proteins build up in the body, your kidneys don’t work properly. This means they have trouble filtering protein out of the urine. As a result, you get low amounts of protein in the blood and a lot of protein in the urine — a condition also known as proteinuria.
Not everyone experiences symptoms of proteinuria. The level of proteinuria is a very important marker of disease progression. Finding proteinuria early is vital to prevent progression to end-stage renal disease. Long-term and untreated proteinuria can lead to symptoms like:
More than 75 percent of people with renal amyloidosis experience swelling. Nephrotic syndrome causes swelling for two main reasons.
With proteinuria, your body may filter out albumin, a protein that keeps fluid in your blood. When you experience hypoalbuminemia (less albumin in the blood), this allows fluid to leak into your organs, which can cause swelling, especially in your feet and legs.
Also, the kidneys can hold on to too much sodium, even before albumin levels drop. The increase in blood volume causes fluid to build up, especially because the blood vessels become unusually leaky. This buildup can also lead to swelling.
Low levels of albumin in your blood trigger your liver to make more protein. During the process, other proteins, including cholesterol, are also made. High cholesterol levels with swelling may result in weight gain. Alternatively, low blood pressure is also a symptom of kidney-related amyloidosis.
Renal amyloidosis may also trigger anemia. Anemia is a condition where your body produces low amounts of red blood cells. With anemia, you may experience tiredness and shortness of breath.
Dialysis-related amyloidosis affects your bones, tendons, and joints. Common symptoms are joint pain, bone cysts (lumps), and carpal tunnel syndrome — pain in your wrist and hand.
If you’re worried about renal amyloidosis, talk to your healthcare provider. Typical diagnostic tests for renal amyloidosis include:
Different treatments slow down amyloid buildup and target each subtype of renal amyloidosis. The right treatment for you depends on the type you have and how much your kidneys are affected.
Treatment for AL amyloidosis targets the cells responsible for forming amyloid clumps. A common treatment is chemotherapy, which stops or slows the growth of damaged cells. Another option is a stem cell transplant, which uses healthy cells from your body to replace the damaged ones.
Newer therapies like daratumumab, bortezomib, and other proteasome inhibitors — drugs that block the breakdown of damaged or unneeded proteins in cells — have significantly improved outcomes.
Because AA amyloidosis typically comes from inflammation and infection, treatment targets these underlying conditions. Healthcare providers may prescribe antibiotics or anti-inflammatory drugs.
Research on LECT2 is new, making it difficult to find treatments. If you’re living with LECT2, your doctor may recommend drugs to ease the symptoms. Medications like diuretics balance urine production and fluids in your body.
People with hereditary amyloidosis often produce abnormal amyloid proteins in the liver, and a healthcare provider may suggest a liver transplant. With dialysis-related amyloidosis, it’s important to limit the kidneys’ amyloid deposits. In this case, a kidney transplant is one of the options.
Sometimes, your healthcare provider may prescribe drugs to treat the side effects of kidney-related amyloidosis.
Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) are drugs used to control blood pressure. ACE inhibitors and ARBs help lower pressure in the glomeruli, which may reduce proteinuria and slow the amount of protein leaking into your urine. It’s important to have your kidney function and electrolyte levels checked regularly while taking ACE inhibitors or ARBs.
Diuretics help your body remove fluids and reduce swelling. Sometimes, diuretics alone don’t work, and your doctor may recommend changing your diet. Eating too much salt can cause your body to retain water, which leads to swelling. If you’re living with renal amyloidosis, try to reduce your salt intake — it’ll improve your swelling, blood pressure, and renal function. It is important to understand that these medications are treating symptoms and not the underlying amyloidosis.
Talk to your doctor to find out which medicines and food choices might help with this condition. Treating your renal amyloidosis can greatly improve symptoms and quality of life. A member of MyAmyloidosisTeam said, “I’m doing fine, meds are working, shortness of breath has abated, the swelling has gone down, blood pressure is within limits and my energy level is back up.”
MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. On MyAmyloidosisTeam, more than 2,700 members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.
Have you had protein in your urine or swelling? How has amyloidosis affected your kidneys? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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